Hi everyone, I finally have my appointment with neurology 16th May .My gp is taking me off pregabalin and advising amitryptaline (excuse the spelling) I explained this was also used as an antidepressant so would aggravate my symptoms, he then got quite angry and said well there's nothing else you can take so you'll have to go to hospital ??????
I despair of our NHS.
Please can someone bulletpoint exactly what works and what to avoid before I attend neurology.
Thankyou .
Download and share with your gp the Mayo Clinic update guidelines: mayoclinicproceedings.org/a...
It is comprehensive and easy to read / skip through to the relevant section.
Or have you done that already and did your gp dismiss the ‘US’ approach? Do keep in mind that it is your body and that you can decline suggested medicines. I haven’t checked your other posts, but maybe there is another, more open-minded gp in the practice?
Hi lottie, thankyou.I've been given all DA.
Gabapentin gave me awful depression, pregabalin swollen and black hands and also not given the option to stay on this .
Haven't found anything works long term, just very short term then the volume goes right up ....
Hopefully you will see a neurologist who has done some background research on RLS and anti depressants.As gabapentinoids were problematic for you, and the iron infusion hasn't helped,a low dose opioid will be the next line treatment for RLS.
The safe anti depressants for RLS are trazodone and wellbutrin.
Who are you seeing?
I don't have a name ,just neurology at Preston
The MS neurology teams at St George's & Bart's London, no longer prescribe dopamine agonists for RLS associated with MS. St George's prescribe gabapentinoids, but Bart's prescribe methadone. So do mention that when you have your appointment. If you see a PD neurologist, they can sometimes be problematic, as they're more likely to prescribe DAs and seem unaware that RLS patients quickly experience augmentation and Impulse Control Disorder.Good luck.
Hi I live in Fleetwood the GPs have no idea about RLS . Before I moved here I lived in west Yorkshire, I don't know how I ended up speaking to my neurologist but I have telephone appts regularly as he's too far away to go and see in person !! He has been a godsend very knowledgeable about RLS! I have tried most meds now for my RLS!! I'm still finding the only thing that works is opioids !! Sometimes when I'm having a bad night I'm prob OD ING on them 🙈 (not majorly!) u try anything to sleep don't you. I'm now on rotigotine patches as tried most other meds with no success! Only option after this is oxycodone ! Hope your neurologist is sympathetic RLS should b a disability as we can't function trying to work when we've had none or little sleep !!
Good luck hope u get somewhere with your treatment of this horrible condition take care
I was advised agai St the patches as they're DA and will.eventually lead to augmentation which I've already been through on pramiplexol. It really is a lottery to find what works for each individual isn't it?
I was given ropinerol after pramiplexol and went to Italy, I didn't sleep for 5 days it was the worst experience, came home they put me back on pramiplexol etc etc and then I found this forum ...thankfully. x
oh no that sounds horrific !! Your right I've tried a lot of meds for it probs keep going till I find something that works !! Hope u get some relief soon and yeah this forum is a great help!! Stay on here u will get great advice from knowledgeable people good luck 🤞🤞
Nooooo!
Not amitryptiline!
For fear of your sanity.
I previously recommended buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals..
Thankyou unfortunately my gp hasn't listened to this so I'm taking your advice and suggestions with me to my appointment, fingers crossed and your knowledge has been a godsend.
Amitryptiline is the worst thing for RLS. Your GP sounds a complete disaster!My UK GP put me on low dose buprenorphine & it works for me.
Could you change doctor?
Don't let tour doctor take you off pregabalin without doing it slowly. It can take months if not up to a year to come off it without awful side effects. It's addictive and needs to be treated as such. The only thing I can suggest is Acupuncture. But you have to get the right practitioner. Some don't understand the problem. I went to a lady who practiced Western mixed with Eastern. She is a miracle worker. If you live in the west sussex area I can give you her contact number. If not you should be able to find a good practitioner somewhere.
Currently reducing by 25mg every 2 weeks... at 300mg I feel sedated when I wake up for hours !!!!!
I'm on 2,500 mgs per day split over 3 doses. My brain is not functioning at all! I didn't know you could get 25mg capsules?
2500 mgs is way ,way too much. The usual maximum is 450 although one can take up to 600 mg. Are you sure you didn't mean 250 mg?
I take 900mg in the morning and at 2pm then 800mg before bed. The doctor recently upped it from 3x800mg because of an allergy I am dealing with. I bought a new sofa and was allergic to it so it had to go back. Now I have to wait 9 wks for another one.
As I said that is way too much. Check out the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...
Also "doses up to 1200 mg have been used for RLS, although doses ≥600 mg provided no additional benefit in clinical trials." Unfortunately the reference for this cannot be accessed because it is by subscription only.
I would ask your pharmacist about the dose you are taking and you will find that 600 mg is the maximum dose.
I suggest you print out the appropriate section of the Mayo article and show it to your doctor so you can slowly reduce your dose. You need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have very few or no withdrawal effects.
I take gabapentun for a neuropathic condition which causes severe nerve skin pain. It feels like pins and needles plus prickles and thorns all over my body, every inch. Any pressure on my skin feels like these prickles are being driven into to my skin. Only a high dose of gaba stops it. If I lower the dose further than 800mgx3 I begin to get breakthrough pain. I also suffer from ERM. If I don't get my feet cold enough then I get mild RLS which mostly happens at night.
Oh - I thought you were referring to pregabalin since that was what the conversation was referring to before your reply.
Yes you can take up to 3600 mg of gabapentin. However don't take more than 600 mg at a time as it is not as well absorbed above 600 mg. Your need to separate the dose by 2 hours.
My source is the Mayo Clinic Updated Algorithm on RLS "Because of nonlinear kinetics and substantial interindividual variability, the gabapentin dose often does not always reflect serum level, especially at single doses above 600 mg. For this reason, multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy." Https://mayoclinicproceedings.org/a...
You actually get less gabapentin at doses above 600 mg, For example 900 mg taken at 1 time is equivalent to 540 mg.
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason .
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I just realized in looking back at my notes that I told you some of this before.
Yes, I think you have. I tried taking 600mg then another 200mg later but didn't find it as effective. I take my last dose before bed so can't space the last dose. My doctor put me up to 900mg recently plus antihistimine tabs to help combat an allergy. I bought a new sofa which when it came absolutely reeked of a strong horrible chemical. I tried airing it by leaving my patio door open. With the wind blowing through the lounge it was as cold inside as out at 11 c. It didn't take the smell off and i became allergic to it. It stopped the effects of the gaba. so at 3 weeks later it was returned. The allergy is abating so i tried Knocking down the gaba by 100mg, in the morning but that leaves my skin crawling. I'm despairing at knocking it down. Will I be able to do it.
That's terrible about the sofa.
There's no reason to reduce the gabapentin if it is helping you.
I hope you are taking one of the antihistamines that are safe for RLS. They are Claritin (loratadine, Clarityn, loratadinein), , zyrtec (Cetirizine), allegra (Fexofenadine) or clarinex ( Telfast).
I'm on Fexofenadine. It seems to help with hot flushes too.
Great.
Omg how much ??????? That's really high ,I'm surprised you are able to stay awake ????
I manage to stay awake but I have no balance whatsoever.
She was talking about gabapentin, not pregabalin.
I've contacted someone here,thankyou for your suggestion.
Ask for Targinact a slow release opioid which is licensed for rls in the UK. It works for me.
Thankyou
What can I expect from Neurology Referral?
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Neurological Alliance 2018/2019 Patient Experience Survey - open to residents of England
Found a good RLS specialist (neurology consultant) in the North West of UK 
